I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, August 5, 2015

Extra Bones, Seizures and Then Some!

As I sometimes refer my life to a whack a mole game, I'm sad to say we are, unfortunately, in full whack a mole effect!  Every single time I pop my head up for air...BOP!

Zach has been complaining about his legs hurting for a while.  We chalked it up to how active he is and the fact that he's pretty flat footed.  My mom kept telling me to take him to see a foot specialist so after a few more weeks of complaining I made the appointment.  Loved the doctor.  He said he wanted to take some x-rays because at his age, he wanted to make sure his growth plates hadn't fused.  The doctor called me out in the hallway to look at the x-rays and said "I know exactly why his legs are bothering him - and rightfully so, he has what is called a navicular."  "A na what?!?"  A navicular is an accessory bone that less than 20% of the entire population have.  Ahh.  Insert laugh here.
So $200 later we left with some inserts for his shoes because apparently a navicular can wreak havoc on your knees later in life so he will have to wear these inserts into his 20's.  (And have them replaced every 2 shoe sizes.  At the rate he's growing these should last him until September)  When we got home he took his x-ray and hung it on the side of the fridge where Alex's back x-ray was hanging and he said he was putting it up "on the Wall of Fame with Sissy's".  I told him it was more like the wall of shame, not fame!  I guess when your sister is the one with all the cool black and white photos all the time you will take what you can get!

There has also been some discussion on whether or not Zach may have a connective tissue disorder so we will discuss that more at a doctor appointment on Monday.

It's been one year since Zach and Aaron dealt with their melanoma issues and today we went for their three month check up.  They both got a clean bill of health!!

Another big, BIG piece of news is that we are moving.  It is becoming increasingly harder for me, and everyone who cares for Alex to cart her up and down the stairs safely.  She's only going to get bigger, and unfortunately, us only older so we needed to find a house with a first floor bedroom.  But....unfortunately we've run into a few snafu's along the way and our closing has been delayed.  We were supposed to have moved 8 days ago but that didn't happen and we have no new closing date on the calendar either.  I'm starting to get REALLY anxious for several reasons.  To make matters worse, we sold our living room furniture so we are now basically sitting on the floor.  I was trying to be proactive with transferring all of our utilities to the new house and cancelling services we wouldn't be needing at our old house anymore so the good news is I was able to reschedule the utilities.   The bad news is we have no TV, internet, or phone.  How primitive!  The only good thing that has come of that situation is that it has forced Zach to look for other forms of entertainment.....

Gasp...reading!!!  That's one way to get him to meet his summer reading requirements!  The fuzzy pink chair is an awesome accessory, don't you think?!?  Living room furniture is highly overrated. 

We've spent a lot of family quality time playing the Wii!  However, I do think it should come with a few more warning labels - I could barely walk after the first night of our intense competition.  Apparently none of us like to loose.

And, because the dog should not be exempt from our family drama, he's looking a little different these days as well.  I took him in for a bath and a hair cut yesterday.  He's a Lhasa Apso - so he's normally a bit fuzzy with long ears....like this....


When I dropped him off for his appointment yesterday afternoon the girl at the counter told me he wasn't on the schedule for the day (I literally made the appointment the night before).  I could tell she wasn't overly thrilled with taking him so when she called me to tell me he was ready to be picked up and said, I just want to tell you that I had to take his ears and tail a little shorter than normal, I knew I shouldn't have left him! 


Oh well, it's only hair and it will grow back.   On the plus side I guess he's a lot cooler now.

We've been noticing that Alex has been having a lot of tremors lately.  I called her neurologist who checked the recent blood labs we had run and it showed that Alex's Valproic Acid levels (one of her seizure medicines) was high so we are having to adjust her medicine.  Alex has been on Valproic for years and I've been wanting her off it for a while now because of how it metabolizes through the liver and the overall toll it puts on her, but the doctor's theory has always been that it's been helping her seizures so they were afraid to change up her meds.  Her doctor and I spoke about putting her in the hospital to completely take her down off this medicine and try a new combination.  We are in the process of taking her down some here at home and increasing the other seizure medicine she is on but it looks like she will have a hospital stay in the Epilepsy Monitoring Unit in the very near future.

I posted last month about Alex's back and her scoliosis progressing so quickly.  Just a week after her x-rays her therapist said she felt like her back was already worse.  It's so puzzling to all of us how it's progressing SO fast and yet she is, for the first time in 13 years, making so much progress in physical therapy with her walking and motor planning.  Shannon wanted us to go back and have another x-ray done for comparison purposes and I was heart broken today when the doctor told us that in just over 5 weeks her curve has progressed from a 30 degree to a 46 degree.  Because of Alex's underlying neurological condition, she has a neuromuscular scoliosis that gets worse with growth spurts and age.

The picture on the left was her 30 degree curve at the end of June and the one on the right, 46 degrees was today

Tomorrow morning we are heading out to have her measured for a brace.  She is going to have be in the brace for 20-23 hours a day, which means sleeping in the brace as well.  The brace is plastic.  This is NOT going to be an easy task for any of us.  Once her curve reaches 60 degrees it will start having an impact on her heart and lungs.  I am so sad that surgery is looking more and more evident.  She is so proud of herself when she takes her steps in her walker.  We have worked years and years and years to experience this and a surgery of this magnitude is only going to set her back.  

I just started going to a new church and Sunday School class which I am loving.  I don't think it was accidental that my first day in the class was the day they started their series on Job.  If you know the story of Job, I really feel like the pile of ashes I'm sitting on is getting higher and higher.  Which I guess is God's sense of humor since I don't have a couch to sit on so he's making other accommodations for me!  All joking aside, please, please say a prayer for my girl and this brace.  The doctor told me not to get my hopes up that this is going to help in any way. 

...But faith and hope have gotten me this far.